Question

noisy breathing that may be subglottic stenosis - anyone heard of it?

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My baby boy has been making this deep breathing noise like he is snoring, and the noise comes from his throat. We brought it up to his pediatrician at his 4-month-old check up today. At first, the pediatrician thought it maybe laryngomalacia but she ruled it out after finding out the noise continued when he was flipped. Then, she suggested that it could be subglottic stenosis and asked us to take him to a ear, nose and throat specialist if it gets worse. When researching the disease, I am surprised that nothing comes out from babycenter, although one of the causes is from the prolonged intubation / ventilation that causes scarring/narrowing in the airway. My son was born premature and was put on a feeding tube in the NICU for about 2 weeks. I am wondering if anyone has a LO or a preemie that is diagnosed with subglottic stenosis, or has even heard about the disease?

Mom Answers

Hi! I am 35 and have sub glottic stenosis and partial paralysis of the vocal chords. I was 8 weeks premature and was on a ventilator for quite a long time. In early childhood I was tested for asthma and sent to an ENT specialist who diagnosed me with 'narrowing of the larynx'. After yearly tests I was finally diagnosed as having sub glottic stenosis and partial paralysis of the vocal chords as a result of damage and scarring following prolonged intubation as a preemie. I live a normal life but just can't do demanding physical exercise such as running. I have a stridor and have a raspy voice. I get breathless very quickly on physical exertion. I also have a noisy breathy like snore when I sleep. Luckily nowadays they are pioneering surgery and implementing treatment plans to prevent the scarring( that I have) if caught early enough. This is too late for me however. I also have yearly check ups with my ENT consultant. Hope this helps.

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